Month: August 2014

How #DIYPS became a part of our engagement

by Dana Lewis

Confession: I like to plan things. However, there’s one thing I can’t (won’t/wouldn’t) plan, which was our engagement.

Oh, did you hear? Scott and Dana are engaged! :)

Some time ago, I had joked that if/when we got to the point of making this decision, that he definitely couldn’t do it while I was low, because I would be feeling awful and I wouldn’t necessarily be able to remember every detail, etc.

Fast forward to this weekend

Scott and I hopped in a van on Thursday and drove down to Portland to get ready for Hood to Coast. Luckily, unlike my Ragnar run, our start time was a more civilized 9:30 am so we had time to see the sunrise before we started the race on Friday.

We headed up the mountain, and then I kicked off the race by running down the mountain (awesome). We then proceeded with the race, which like Ragnar, is completed by having 12 runners in 2 vans take turns covering the course until ultimately you end up in Seaside, Oregon to finish. There were some snafus on the course by the organizers, including an hour-long-plus backup on the road where you were supposed to be able to get to a field and be able to sleep in said field. However, by the time we had arrived, they closed the field, so we ended up getting less than an hour of sleep on the side of the road, smushed together in the van (7 people in one van!), before I had to crawl outside and force another few miles for my last run.

But, we finally finished, made it to Seaside on Saturday afternoon, and stood around waiting for our van 2 to fight through traffic and get there so we could cross the finish line together and be done! Everyone from our van (including Scott) ended up standing around in a crowd with a few thousand of our closest friends for more than an hour. Once they made it, we crossed, grabbed our medals…and were done.

Most of the team decided to head into the beer garden before splitting up for dinner and heading back to the hotel. I voted for heading back to dinner right away, because the sooner I ate, the sooner I got to finally go to sleep! Scott and I decided to head back.

Where I start unintentionally thwarting Scott’s plans

Scott suggested walking on the beach as we headed back, but as we skirted the finish line area, I realized how much it hurt to walk on the uneven sand with sore legs and hips from the run, and vetoed that idea. So we walked up off the beach to the esplanade/promenade, and walked down it instead. I called my parents to let them know we were alive after the race, and by the time I was off the phone, we were nearing the end of the esplanade. Scott asked one more time if I was sure I didn’t want to walk out to the beach. I think I said something along the lines of, “Fine, we can walk up to the beach, as long as we don’t have to walk up and down it!”

We walked over to the edge of the beach on the ridge, where you could see the fog and not much else, although there weren’t many people around. At that point, Scott was checking #DIYPS on his watch, and saw that I was dropping from the walk and projected to go low, so he suggested sitting down for a few minutes as a break before we walked the rest of the way back to the hotel for dinner, and starting a temp basal to help prevent a low. He told me to pick a spot, so I picked a comfortable looking log, and we sat down. Scott gave me a few Swedish fish to eat just to make sure I didn’t go low, and then while I was looking around at the fog, he started reaching into his pocket again and telling me he had another question for me.

I still had no idea what was going on (something about running a lot of miles and 1 hour of sleep), so I just looked at him. He pulled a box out of his pocket and opened it to another box, and I started to have an inkling of what MIGHT be happening, but my brain started to tell me that nope, wasn’t happening, what kind of person carries a ring in their bag/pocket all weekend around so many people without me noticing it, and didn’t we just run a race on one hour of sleep, and oh my gosh what is he doing?

By that point, he had flipped around and gotten down on one knee, asked me if I was ready to make it official, kissed me, and asked me to marry him. Thanks to #DIYPS I was *not* low, and despite the lack of sleep I had figured out what was going on at this point, and was able to say yes! :)

For those keeping track at home, despite my BGs starting to swing low which was supposed to be the reason we stopped to sit down…I later looked, and my BG never dropped below 99 during all of this! :)

My #DIYPS view is a little different now :)
My #DIYPS view is a little different now :)

 

 

Being female, a patient, and co-designing #DIYPS means often being discounted

by Dana Lewis
As great as #DIYPS is, the entire experience of innovating hasn’t been what I wish it was. @danamlewis on the #DIYPS experience as a nontraditional innovator who is both a patient and female. (w/ @scottleibrand): http://bit.ly/1p5U0P9
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Scott and I have been co-designing and co-working on #DIYPS since November 2013. (Click here to learn more about #DIYPS if you are new to it.)

I don’t work in the tech industry for my day job. (#DIYPS is something I do in my spare time and in no way related to my day job, thoughts are all my own, etc.) The more that I engage with others in the “industry” through #DIYPS work, the more I’m reminded of why I’m glad I don’t do this full time as a career. Being unintentionally but automatically disrespected and discounted creates a hostile environment, and makes it difficult to remain engaged and motivated to do great work.

Here’s why we’re writing this post:

Many conversations (not all, but any is too many) and potential collaborations about the technical development of our project (#DIYPS) have required starting with a leveling of understanding of why I am participating in the conversation.

Sometimes it seems to stem from the misunderstanding that because I am “the patient” (the end user of the system we’re building) and not an engineer in my day job, I don’t/can’t have a very deep understanding of how this works on the back end.

Perhaps it is so “easy” to misunderstand because we don’t often enough see patients who take the opportunity to design and build the tools they need to manage the chronic diseases they live with every day?

Scott’s take: #DIYPS was built jointly by both of us. Dana provides all the data, of course, but she also had dreamed up a concept for a DIYPS-type system months if not years ago before we were able to get John’s uploader code and start making it happen. Once we started actively developing the system, Dana was involved in every single product decision, and made every major decision on how the system should work. I of course contributed a number of ideas about how it could work better, wrote much of the code, and did initial testing of everything I wrote. But Dana did the real-world beta testing, decided what would and wouldn’t work from a usability perspective, prioritized feature development (and even bug fixes), and directed the project in countless other ways. If we end up patenting #DIYPS, her name will be listed first.

And yet, the assumption always seems to be that Dana must not have a complete understanding of the system, and can’t possibly have full ownership of #DIYPS.

Perhaps the reason Dana has to battle at the beginning of any conversations to be taken seriously as an active participant is even simpler: she is female. Even when she mentions coding experience (C++ and FORTRAN 90), and/or I mention her role in creating #DIYPS, the discounting continues. Why is that? It usually takes fairly subtle forms (such as directing all questions about how the system works to me instead of to Dana). It is undoubtedly subconscious in almost all cases, but that makes it all the more insidious, because people don’t seem to correct their misconceptions as quickly when they’re not aware of them.

This experience is not ok.

Dana’s take: All of the above frustrates me greatly, to the point of writing this post because I’m not sure what to do about it beyond calling it out individually when I see it (Scott is also great about pointing it out and looping me back in). It’s a systematic issue*, and something I’ve heard is experienced by other patients or other women working in tech, which heightens my frustrations.

Having these experiences repeatedly burns me out from wanting to innovate further, and to go back to just keeping myself alive. Which is selfish. And I don’t want to just do that. But sometimes it feels like the only option.

Here is why this type of experience is damaging:

Disrespecting, discounting, and excluding someone wastes an excessive amount of time that could be spent talking about moving #DIYPS and projects like Nightscout forward and saving lives now, while #WeAreNotWaiting for the medical device industry and the FDA to catch up.

Discounting others automatically is a disservice to you, can be extremely frustrating to them, and it takes away from everyone’s time.  But most importantly, it saps their energy and motivation to make a difference in the world. And in an era where technology is enabling us to do so many amazing things, including actually saving lives with technologies we’re inventing in our spare time, wasting time and demotivating innovative individuals might mean not saving lives we otherwise could.

If you read this far, we would both encourage you to think about your own behavior when you meet with people, including what kinds of questions you’re asking them. (This is a related good read from a male perspective.) If you find yourself asking questions of someone, or making assumptions about their role or capabilities, think about whether you ask the same questions of others that you speak to. Don’t automatically discount or question someone, make assumptions, or treat them differently just because they’re young… or female… or a patient… or old… or don’t appear to be technical… or whatever your initial perceptions may be.

As many recent articles show, this is a problem across the high-tech industry, with many widespread examples, and some truly awful behavior. But those of us who are working with volunteers trying their best to make the world a better place need to hold ourselves to an even higher standard, and work to overcome even the implicit biases that lead us to ignore or discount valuable contributions from some of those who are most eager and able to help.

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*If you have any other ideas about how to handle these situations in a way to point out to someone what they’re doing, and also more widely educate the world so we don’t waste as much time and energy on in these situations (or having to write or read more of these types of posts), we’d love to hear them.

–Dana Lewis & Scott Leibrand

“Micro” highs and lows (they’re not really all the same)

by Dana Lewis

More thinking on what a snapshot of diabetes data means to me – this time on ‘micro’ highs or lows. @danamlewis #DIYPS http://bit.ly/1lt2ijE

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I went to take a snapshot of my 24 hour CGM graph, because I was pleased with the outcome of the past 24 hours: no major lows or highs. According to the picture, it’s a “no hitter” (not hitting the high or low lines). However, I have the high alarm set to 170 right now, so to me knowing that I peaked around 150 overnight, including the slow crawl up to it, means it wasn’t a true no-hitter.

But, isn’t it still worth celebrating? No major overnight alarms to wake me up. No juicy juice or temp basals or reduced sleep or waking up feeling like I was dehydrated and apt to develop ketones. Diabetes, for a day, wasn’t a big deal. Isn’t this the ultimate goal of living with diabetes – living well, and not letting it stop us from living our lives and doing what we’re striving to do?

I tweeted the CGM picture with this caption:

Because it’s true. A 400 and 121 are both technically, medically speaking both “high” and “highs”. But are they the same? No.

(And same goes for any single data point – 121 could be flat, going up, or sliding down – the trend is what matters, regardless of what FDA has agreed to at this point in time. )

So, I’ve decided to categorize things as “micro” highs and lows when I’m sliding slightly below my comfortable range (like floating in low 80s or 70s and feeling low symptoms) or rising above what’s “normal” (80-120 is burned into my brain as normal), but may not warrant taking a picture as a “high”.

Semantics? Maybe. But as we talk about what these numbers represent, our ability and willingness to have a conversation about them online, including defeating data-shaming, I think it’s worth continually reframing and gaining more perspective on what diabetes data means to each of us.